Our vision, muscles and inner ear
are responsible for keeping us upright and balanced. When working normally,
we don't think twice about this mechanism, often referred to as our sixth
sense. We are able to move around without worrying and the only time we
may notice our balance is if we go on a rollercoaster at a fair and experience
momentary dizziness and spinning when we step off.

I felt this sensation one morning
in October 2002 upon waking. But I hadn't been anywhere near a rollercoaster
or a fair. It was a most peculiar feeling, far worse than a funfair ride,
as well as a dizzy feeling in the head, I felt vaguely drunk and the world
seemed very surreal, as if I was looking at it through lenses which were
not right for my eyes. I reassured myself, sure it was just a brief virus,
but I was worried when it persisted and seemed to get worse. I remember
going to a restaurant with friends and feeling completely disconnected,
the dizziness was like nothing I'd ever experienced before - my only recognition
of dizziness was if I hadn't eaten enough or had the lightheadiness you
get with a cold. But this was different. It wasn't lightheadiness. I almost
felt half blind, especially when walking in the dark, as if I was in a
strange bubble and wasn't really on earth.

After about 10 days, I panicked.
I went to the doctor as the sensation had got worse and any movement of
my head made me incredibly dizzy, as if there was something rolling around
in my brain. My eyes felt stiff and were unable to focus properly. I felt
really drunk and unsteady. I also had blocked ears and popping - like
the feeling you get when you have a cold though I wasn't congested. My
GP announced I had Labyrinthitis, an infection of the inner ear and that
it may take a little time, but "by Christmas you will have forgotten all
about it". I felt reassured.

At the time, I was doing an intensive
University course so keeping up with this was difficult. Aswell as 24/7
dizziness, my stamina was low and I felt very tired. I was also restricted
in what I could do as the dizziness made activities like shopping unbearable.
Crowds seemed to make it worse and people moving around made me feel sick
to the stomach. It was like I had 3D glasses on but was unable to take
them off. Darkness was now even more uncomfortable too - it seemed to
make the dizziness so much worse and walking was a real struggle. I managed
to carry on with my course and by Christmas, went to see an ENT specialist.

He did tests and ruled out Menieres
Disease - a vestibular disorder which is caused by high inner ear fluid
levels. He also announced I had Labyrinthitis and that damage had been
done to the inner ear by a virus and that this damage was permanent but
that my brain would compensate for the injury.

He also proposed that I may have
mild Eustacian Tube Dysfunction as a result of the virus scarring the
Eustacian tubes in some way - this accounted for my full, clicking ears
which were also very sensitive to pressure (although I have since found
that out that Labyrinthitis very often causes "ear" symptoms as well as
dizziness). He prescribed me some exercises to do to retrain the brain
and suggested I stayed clear of anti-dizziness medications as this could
hinder the compensation process. His last words were "it may take several
months" and on hearing it, I felt oddly reassured that that was why I
had not yet recovered like the first GP had predicted.

It did indeed seem to be taking
several months and the more time went on, the more disheartened I became.
The whole thing was making me feel quite low as persisting with my course
was so very hard as it was demanding and very practical - I had to be
alert and able to be physically active. I tried the exercises though by
the time I got in from university every night, I just wanted to sleep
and so never seemed to keep up with them plus they seemed incredibly mundane
and I somehow doubted their effectiveness.

I contracted a few colds and other
infections which sent my dizziness insane - the spacey, dizzy, disorientated
feelings would be magnified and I'd have to stay in bed and sleep for
the majority of the infection. Trying to walk with a cold was a nightmare
- my dizziness was scary and I worried my ears had been hit again with
another virus. On one occasion I fell in the street as the ground just
dropped beneath me - a passer by picked me up and said "Are you drunk?".
"No" I said "But I feel it". Each time after a cold, it would take up
to 2 weeks for the dizziness to return to its former state. I would also
often experience "true vertigo" with colds - where all I could do was
lie down and grip hold of the bed whilst the room spun violently around
me.

For the last 3 or 4 months of the
course, I would cry myself to sleep every night praying the dizziness
would stop and every morning I got out of bed just hoping that today would
be the day I would get my life back. In June 2003 I graduated. Although
I had graduated from a university before at undergraduate level, my success
in achieving this qualification meant so much more to me because it was
such a hurdle for me to have got there.

I went on a long plane flight in
August 2003 as I thought getting away and recouperating may be what needed.
To my horror, I suffered huge dizziness problems both in the air and when
disembarking. I developed a constant motion feeling in my body, as if
I was a pendulum and the ground constantly moved - I could both see it
visibly jumping and feel it beneath my feet. Anxiety grew at this point
and felt very scared to even go out. Before the flight I got respite from
the dizziness by lying down - now lying down merely made the ship feeling
more intense. I felt as if I was on a permanent water bed and sleeping
with this feeling was very difficult and disconcerting. This I learned,
was a form of vertigo.

The feeling eased after about 2
months though the constant motion stayed with me for some time. It varied in intensity. Most of the time I felt like a ship
on calm waters - other times like I was in a force 10 gale in the middle
of the ocean.

After seeing the same ENT again,
as well as Neurotologist at a top hospital in London (who confirmed my
diagnosis and insisted I would recover) I am now undertaking a Vestibular
Rehabilitation Therapy programme. For those with chronic or prolonged
balance issues, this appears to be the only cure - as well as time. The
exercises are designed to provoke dizziness and aid the brain to compensate
for the damaged inner ear. Diligence is essential and the exercises must
be done regularly and over a long period before improvement is noted.
I am noticing that my "good" phases are getting longer though the progress
is slow. I am now clear and mentally prepared for the fact that recovery
will be a long haul.

What have I learnt about my experience?
Too much to even mention. I have realised the difficulites and frustration
faced when having a chronic health problem; I have learnt that illnesses
where you "look fine" are incredibly difficult to cope with as people
think you "are fine". Inner ear dizziness is a very strange symptom -
firstly you have the fact that most people think of dizziness as lightheadiness
or faintness where as inner ear dizziness could not be any further from
this description. Secondly it is just too tricky for people to see dizziness
in someone else - they can't. Thirdly, the majority of people think I
have "spells" of dizziness and they have no idea it is there constantly
and has been all this time.

So, I think I find some of my mental
exhaustion stemmed from people not being able to understand how I felt.
Of course when you look fine and can also function well (or appear to)
on most days, simply carrying on as normal when you couldn't feel further
from normal, is excruciatingly draining.

I have learnt the value of good
health and also of the meaning of friendship. Some found it hard to gauge,
others got bored when I'd had it for so long, many had no idea of just
how much I was suffering. Others were simply amazing. They were patient,
constantly supportive, understanding and most of all, gave me hope. Of
course I have encountered unhelpful comments like "Will you have it for
life then?", "I feel dizzy too as I've got a cold", "You've had that for
ages, isn't there anything you can take?" and "There are far worse things
you could have" (this last comment is true but it certainly isn't an appropriate
thing to say to someone suffering from such a distressing condition!).
I simply had to boil inside at such comments and smile on.

I have learned to be more compassionate
- I realised that because I look and sound fine, sometimes people can
only relate to what they see or what they've gone through themselves,
or what they THINK they know. I have so much more patience and tolerance
for other people and their limitations and faults because of MY experience
with this. You just never know what someone else is going through.

When such few people understand
the nature of vestibular disorders (including the medical profession as
I learned) it is even harder for people to understand that having a chronic
illness can also lead to feeling low.

One thing that did keep me going
throughout my ordeal was an internet support group for people with inner
ear problems. Through this I met Isla, who I spoke to a lot about the
illness as she had just he same symptoms and experiences as me. It was
so nice to find someone who actually knew what I meant when I said that
objects moved and the ground bounced! Her friendship has kept me strong
and I am so very grateful I found her.

Anxiety is another factor I experienced
a little with this. Although luckily mine has never been severe, on occasions I
certainly exhibit 'avoidance behaviour' but who wouldn't with this disorder?
I learnt to try and overcome this by making myself to do more, though
this does not mean putting myself in situations I know I will find too
difficult.

I do feel that what "shall be,
shall be" and I think patches such as this are presented to us to help
us re-evaluate things. I have reassessed virtually every aspect of my
life since getting this and I have grown as a person. I know I will not
be the same person once this phase of my life is over.

Most of all however, I now have
extreme empathy with other people with chronic Vestibular disorders. I
aim to do all I can for this disabling disorder of "Uncompensated Labyrinthitis"
to become understood and most of all, recognised that a patient diagnosed
with this illness doesn't always recover within the standard 8 week time
frame.

UPDATE (24th December
2004).

Emma has finally seen a Neurotologist
- diagnosed with left inner ear damage - same as Isla! She is on their
VRT programme and is scheduled to have CBT. They stated that dysfunction from Labyrinthitis can go on for a long time and
they don't know why people recover at different rates. Isla recovered
at the 3yr mark so Emma is not there yet! She's hoping 2005 will see big
improvements for her. In the meantime, she plods on through the "Labyrinthitis
journey" - determined to beat it in the end.

UPDATE (August 2008).

Emma has been doing a new VRT programme for a year now and has seen big improvements. She travelled abroad this summer, has been working full time for 3 years and lives a completely normal life.